Mesothelioma and Cancer Information
This is a discussion on Sarcoidosis Information within the Lung & Respiratory Cancer forums, part of the Mesothelioma Information category; Sarcoidosis is a chronic inflammatory disease characterized by small bumps, known as granulomas, that can appear almost anywhere inside or ...
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| Sarcoidosis is a chronic inflammatory disease characterized by small bumps, known as granulomas, that can appear almost anywhere inside or outside the body. These granulomas are small areas of inflamed cells. Symptoms depend on what part of the body is affected. Shortness of breath, irritation of the eyes, raised pinkish lumps on the skin, weight loss, and fatigue are some possible symptoms of sarcoidosis. However, sarcoidosis can occur without symptoms. Because there is no known cause, and because symptoms can be absent or due to other disorders, sarcoidosis is difficult to diagnose. The disease usually begins in the lungs and lymph nodes, although other commonly affected organs and systems include the skin, eyes, liver, heart, nervous system, and kidneys. The disease can appear and then disappear quite suddenly, never to return. In some people, however, sarcoidosis is a chronic disease, with symptoms coming and going for years. These symptoms can be controlled with medication. Much about sarcoidosis remains unknown. Although there is no "cure," sarcoidosis may disappear on its own with or without treatment, sometimes within a year or two. Even when sarcoidosis lasts longer, it is likely that you will be able to lead a normal life. Sarcoidosis is fatal in only 1% to 5% of cases, usually as a result of respiratory failure. It is not a contagious disease. Although sarcoidosis can develop at any age, it most commonly occurs for the first time in people between the ages of 20 and 40. Sarcoidosis affects people throughout the world. Yet sarcoidosis often goes undiagnosed or is mistaken for another illness, making it difficult to estimate how many people have it. Current estimates place the number of people in the U.S. with the disease at about 25,000. Causes The cause of sarcoidosis is unknown. Research suggests, however, that it is an autoimmune disease—one in which the immune system mistakenly attacks the cells, tissues, and organs of a person's own body. Because certain racial groups such as African-Americans are more likely than others to develop sarcoidosis, genetic factors are suspected of playing a role in the disease. Given that transplant recipients have acquired sarcoidosis after receiving organs from donors with the disease, many researchers believe that an infectious agent may be involved. Symptoms Many people with sarcoidosis never develop symptoms. In these people, the disease is usually discovered when a chest x-ray is taken for an unrelated reason. When symptoms do develop, they may occur over one to two weeks, and usually involve the lungs, skin, and eyes. They may also develop more gradually. The most common symptoms are a dry cough, a vague feeling of chest discomfort, and shortness of breath (dyspnea), especially when exercising. Some people develop rashes, nodules (small bumps), or other skin problems. Others may experience:
Table 1. Symptoms of Sarcoidosis Part of body affected Estimated percentage of people who develop the symptom Symptoms Lungs More than 90% Dry cough, chest discomfort or pain, shortness of breath Lymph glands 30% Enlarged lymph nodes, sometimes causing discomfort or pain Heart 5% Chest pain, shortness of breath, abnormal heartbeat, fainting Liver 50% to 80% Pain, jaundice, nausea, vomiting Skin 25% Rashes, nodules (small bumps), pain, itching Eyes 11% to 83% Dry eyes, tearing, difficulty seeing Nervous system Less than 10% Muscle weakness or paralysis, tremors, poor coordination Musculoskeletal system (muscles and bones) 25% to 39% Joint pain, muscle pain or weakness Risk Factors Sarcoidosis affects men and women of all races and ages, although people in Sweden, people in Denmark, and African-Americans appear to be at highest risk. In addition, women are slightly more likely than men to develop the disease. Age is also a risk factor. People between the ages of 20 and 40 are at highest risk, although in Sweden and Japan a second peak in incidence of the disease occurs in women over the age of 50. Diagnosis Your doctor will ask you questions about your symptoms and medical history. He or she will ask you about when your symptoms began, how severe they are, and how long you have had them. To rule out other possible causes for your symptoms, your doctor will also ask you about any medications you may have taken recently, including herbal or other alternative supplements. You'll also be asked about the possibility of having been exposed to various chemicals at work or elsewhere, or if you have had certain infections that could cause similar symptoms. You will be given a thorough physical examination. Your doctor will examine your skin for rashes or nodules, which sometimes accompany the illness. In addition, the doctor will examine your eyes for signs of inflammation or other problems, which can indicate sarcoidosis. Your doctor will also examine the lymph glands in your neck, groin, and armpits for swelling. Part of the exam will include using a stethoscope to listen to your lungs. The lungs are affected in 90% of sarcoidosis cases, and the doctor will be listening for unusual “crackling” sounds when you take a breath. The doctor will also “percuss” your lungs, which involves placing one hand on your chest and thumping it with the fingers of the other hand. The ensuing vibration helps the doctor determine the condition of your lungs. You will also be given a chest x-ray. People with sarcoidosis quite commonly have enlarged lymph nodes, particularly between the two lungs. These swollen lymph nodes may not be noticeable except on a chest x-ray. Your doctor will also look for small round spots in your lungs; such spots indicate clusters of inflammation. An x-ray can also help your doctor determine how much of your lungs have been affected by the disease. Using the findings from your chest x-ray, your doctor will “stage” your illness from I to IV, with IV being the most severe. Samples of your blood and urine will be taken and analyzed. Both will be examined for increases in calcium levels. People with sarcoidosis are sometimes sensitive to vitamin D, which can cause too much calcium to be absorbed through the intestines—and a subsequent high level of calcium in the blood and urine. This can lead to a condition known as hypercalcemia, which, if left untreated, can be life-threatening. Your blood may also be analyzed for a substance called angiotensin-converting enzyme (ACE). The cells that make up granulomas tend to secrete large amounts of ACE; high levels of these enzymes, therefore, may indicate the presence of sarcoidosis, though you can still have the disease with normal ACE levels. You will also undergo and EKG to look for abnormalities in your heart. To further help with the diagnosis, your doctor may recommend other tests.
Because the causes of sarcoidosis are not yet clearly understood, methods of preventing the disease also remain a mystery. There is no screening test for sarcoidosis, although the disease often can be detected on a routine chest x-ray. Treatment Urgent Care Some people with sarcoidosis develop hypercalcemia—high levels of calcium in the blood—which can become life-threatening if not aggressively treated. If you have sarcoidosis, call your doctor immediately if you experience the following symptoms:
Other signs of a heart attack are:
Although there is no cure for sarcoidosis, you can do several things that may make living with the condition easier.
Your doctor is the best source of information on the drug treatment choices available to you. Other Therapies If your lungs lose too much of their ability to function properly and you become unable to get enough oxygen naturally, you may need supplemental oxygen therapy. The extra oxygen can help you sleep better, improve your mood, increase your mental alertness, and enable your body to carry out its normal functions. Supplemental oxygen is dispensed in the home in several ways. You could receive steel or aluminum tanks or cylinders of compressed oxygen gas. The tanks come in many sizes, including portable ones that can be easily used with oxygen-conserving devices outside the house. Liquid oxygen, which is made by cooling the oxygen into a liquid form, can be stored in even smaller containers. However, it's costly and must be used up quickly before the gas evaporates. You can also receive oxygen via an oxygen concentrator, an electric device that concentrates the oxygen that is already in the air. The advantages of this delivery system is that it costs less and is easier to maintain, primarily because it doesn't need refilling. But the oxygen concentrator is about the size of a large television set, which makes it non-portable. Because oxygen can be toxic when delivered at very high levels over a long period of time, oxygen therapy requires a doctor's prescription. Your doctor may also recommend that you receive pulmonary rehabilitation, a combination of exercise, behavioral, and educational programs designed to help you better control your lung-related sarcoidosis symptoms and improve your day-to-day activities. Most pulmonary rehabilitation programs have physicians, nurses, rehabilitation therapists, psychosocial staff, and dietitians working together. Your doctor will help you find a program near you. Because corticosteroids may increase the body's loss of magnesium and potassium, you may benefit from taking magnesium supplements (300-400 mg daily). Be sure to talk with your doctor first. Surgery If your sarcoidosis progresses despite treatment and severely damages your lungs, heart, or liver, you may become a candidate for organ transplant surgery. This procedure gives a person a healthy organ from a person who has recently died, or in certain instances an organ such as a kidney may be donated from a living person (e.g., a kidney transplant or a single lung—not the heart). Complications from the drugs needed to keep the body from rejecting the organ are high, however, and the sarcoidosis may later affect the new organ. Alternative Medicine You should never use alternative therapies for sarcoidosis without first getting your doctor's approval. Some herbs can interfere with medications used to treat the disease. Ephedra sinica (Ma huang), for example, can reduce the effectiveness of corticosteroids, while licorice extract (Glycyrrhiza glabra) can worsen those drugs' side effects. Don't take any supplements with vitamin D—including a multivitamin or a fortified food—without your doctor's approval. If you have developed hypercalcemia as a result of your sarcoidosis, taking vitamin D supplements could be life-threatening. Special Circumstances Women with sarcoidosis who are pregnant may find that their symptoms worsen after the baby is born. In some cases their doctor may suggest they have a chest x-ray within six months of delivery to check the progression of the disease. Women with sarcoidosis do not have more miscarriages or babies born with physical or mental problems than women without the disease. Prognosis The prognosis for sarcoidosis depends on the stage of the disease, the organs that have been affected, how extensively those organs have been affected, and whether or not the disease is responding to treatment. In about two thirds of cases, sarcoidosis heals spontaneously, often without treatment. Most remissions occur within two years of diagnosis. If remission does not occur within this time period, the illness is likely to become chronic. Even then, however, the disease is seldom fatal. Most deaths that do occur are the result of respiratory or heart failure. Table 2. Spontaneous Remission Rates Based on Stage of Disease Stage Remission rates I 55% to 90 % II 40% to 70 % III 10% to 20 % IV 0 % Follow-up Your doctor will want to monitor the progression of your illness. The need to see your doctor will be greatest during the first two years after diagnosis, particularly if you are being treated for the disease. If you have stage I disease, your follow-up visits should take place at least every six months until the disease is under control or in remission; after that you should see your doctor once a year for a check-up. If you have any other stage of the disease, you should see your doctor every three to six months until the disease is under control, and then once annually. Be sure to call your doctor immediately if you are experiencing any sort of difficulties with your medication (such as trouble taking medication as prescribed or unpleasant side effects) or if your symptoms worsen. |
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